Reflections

It's Friday night. Haley and Jillian are asleep. My husband just called and Mikayla just texted me. I continue to be a football widow for one more week. The high school football team that Russ coaches won the 2nd round of play-offs tonight. One more week of football. Haley, Jilly and I sat this one out at home - too cold for these fans. 

I put up the Christmas tree today. So I sit here in the light of the tree - thinking ahead to some things I have to do this next week. Sign Jillian up for Kindergarden. Cardiologist visit. And now a championship football game to sit through. 

And a new year looms on the horizon. So many things to be thankful for. So many good things to look forward too. 

I know I have mentioned before that I try and define my use of this blog as a vehicle to educate others about life with Jilly. Life with a heart defect. Life after the three-staged surgery. Life as it is now after hospital stays, operations - my thoughts, reflections, hopes, frustrations. Not so much a daily chronicle of the Sommers - but more of a chronicle on how one navigates through life with a child that has a life threatening disease, the pain, the emotions, the doubts. But also to chronicle the happy, the fun, the brightness and to give some hope through these chronicles. I know I have also mentioned that what I am doing here is in response to something I couldn't find when Jilly was first born. 

Oh sure, do a google search and a bunch of stuff comes up for the three staged surgery. Lots of miserable, sad, discouraging stuff. And hardly anything came up for her particular set of defects, Tausig-Bing Anamoly - not very common. What I wanted was the stuff from a parents perspective. The feelings, the actions, the emotions, the outcomes. 

Blogs weren't in abundance 4 1/2 years ago. I can only remember coming across a handful. But then again I am computer challenged and technology is not my thing - so maybe I just didn't know how to look for what it was I was searching for. 

Do a search now and tons of blogs are out there on heart kids. It is truly amazing the network of families that has developed through the blogosphere. 

So it is amazing to me that people stumble upon Jilly's blog. I mean, it's what I want, for some random person, sitting alone at the computer. Dealing with a new diagnosis. Researching information. Looking for answers. Looking for hope. To find Jilly.

People have found her. And have found hope. Even some inspiration. 

A mom of a former student of mine emailed me the other day. Her daughter had graduated and went on to college. Her mom asked me a while back if I was ok with her daughter using Jilly's story and her blog for a college assignment. I said absolutely. The mom wanted me to know that her daughter recieved a perfect score on her assignment. She wanted me to know that Jilly's story inspired her daughter to write a perfect paper. That it inspired her to be thankful for her family. That Jilly touched her and her family in a profound way. 

And I thought, wow, more people are being educated on CHDs and that is a great thing. 

I have recently recieved a few emails from CHD moms who don't blog but who find a certain kind of comfort from Jilly's story. Have been quietly following her journey but have never commented. And I find comfort knowing they are out there, sharing the road with me. 

But the greatest.....compliment I guess you would call it........was from Johnny's dad, Dave - whose own story inspires me more than he knows. He recently left me a comment a few posts back that reduced me to a tearful mess. For many reasons. His gift with words being one. But that he expressed to me the same feelings that I was feeling 4 1/2 years ago, sitting alone in front of a computer screen. Feeling more alone than I have ever felt before in my entire lifetime. And he had found some hope and inspiration through Jilly's story.

Dave wrote (and I have Dave's permissions to share his gift of words) "On January 17, 2008, an ultrasound revealed that our 26 week old unborn son had a congenital heart defect. That night, after our daughter was asleep, I was on the Internet, trying to find out as much as I could about what we were facing. One particular random search on google, I can’t remember the word I was searching, led me to your blog, and for the first time I met Jillian. My spirits were lifted. Here was the story of this amazing and beautiful little girl, battling her way through a 3-stage heart surgery, similar to what Johnny was facing. There was hope. Your words conveyed to me that it would not be easy. Actually, it sounded as difficult as anything a family could go through. But at the same time, there was hope."

He wrote alot more. More that really, truly touched me. But that passage there brought the tears and the feelings right to the surface. I can remember so vividly those first few nights after Jilly was born. Nights sitting in front of the computer, tears clouding my eyes, just looking to find one person who could tell me it was going to be ok. Whether it was going to be or not. I just wanted some reassurance. See for myself a child, an older kid, who had gone through the surgeries and was living a "normal" life. For some reason, those nights have affected me so much. I think it was just the deep despair that I felt. That I was the only one going through this horrible nightmare. The nurses couldn't help. My friends and family couldn't help. And at the time, most of the other families at the hospital couldn't help because they were just starting on the journey as well. 

And I felt so alone. 

I don't anymore. 

I guess what this long, rambling post is trying to say is that I am humbled by Jillian's existence. I am grateful that her story has helped others. 

Jilly amazes me. Jilly inspires me.

This blog. Jilly's story. They are so not about me. 

Jilly's story has meaning. I am so glad that I am able to share it.